Reuben

Article from Spring 2013 Newsletter

When people ask me about my brother it’s impossible NOT to smile.  He is such an amazing person!  He’s friendly, strong, funny and has an infectious laugh.  Reuben is completely comfortable being himself.  He doesn’t judge others and has the purest soul I’ve ever met.   It doesn’t bother me that he can’t drive, that sometimes I have to “translate” what he’s saying to others, or that everything in his world is related to a sport’s team- that’s “Rube”, my baby brother and my best friend.

I remember the day he was born very clearly, I was five years old and I was nervous, very anxious to meet what I thought would be a little sister.  I remember being ushered into the room with my grandparents and my mama had the bow on the newborn cap covered up with her hand and then FINALLY she unveiled it and my life was forever changed- Reuben Wade Kleckley was born March 22nd, 1984.  He was named after four generations of Kleckley men and I’m sure my parents had dreams of him playing professional baseball like my daddy and granddaddy did, but God had bigger plans for him.

When Reuben was two days old, he became very ill.  He was having seizures and went into a coma- and the doctors really couldn’t tell my parents why this was happening or what was wrong.  No one had any answers and I remember it was a very confusing time for me because what was a happy occasion quickly became a scary time for our family.  Once he was moved to ICU, I wasn’t allowed to see him because no children were allowed, and that was hard because as a new big sister that’s all I wanted to do.  After a few days, the nurses and my mom got together and broke the rules- dressing me in scrubs from head to toe so that I could hold him.  I remember his baptism and watching him being baptized in ICU with my baptismal gown on, wires all over and a specimen cup taped to side of his head so he wouldn’t pull out his IV again- he was such a pitiful little sight.  When Reuben was about a week old, he was flown to Johns Hopkins in Baltimore and was diagnosed with Propionic Acidemia, at the time there were only about 75 cases in the country so the doctors really didn’t give my parents a lot of hope.  Most children didn’t live past infancy and those who did, typically had significant developmental delays.  The latter proved true for Reuben.

As a child, in those first years I don’t think I really noticed that he had global delays- not walking until he was two or using phrases until he was four.  It never dawned on me that he wasn’t doing things like other toddlers, I was just happy he was with us since there were so many times he almost wasn’t.  I think we were more focused on his health with surgeries and trips to Duke to see specialists than any delays.  I know my parents knew early on that he was going to have challenges, but it took me awhile before I noticed he was different.  I remember the questions from friends and family and sometimes the stares when we would go out in public- it made me angry as a child, but it never made me angry at Reuben, it made me angry at the ignorance or other people.  The only thing that bothered me about growing up with a special needs brother was that it was very isolating, I didn’t know anyone else like me and I didn’t have any friends who understood.  I had no one to talk to about it.  My parents would try, but I was afraid of feeling or saying anything that might hurt them or make them worry.

I think the question I get asked most often is, “Do you ever wish your brother was normal?”  Sometimes people are shocked when I say “no”.  I mean, what is “normal”?  I think about how happy Reuben is, how much he enjoys the simple things in life and how, at 28, he is completely unaware of the negativity in this world.  He’s had a lot of struggles, but he’s had so many more positive experiences!  Having a sibling with special needs is not something you wish for and it’s not always easy, but Reuben has given us so much more than we could ever hope to give him. Christmas mornings are still exciting, watching him sing “Victory in Jesus” always brings tears to my eyes and it’s because of him that I’ve dedicated my professional career to working with children with special needs.

For a long time I’d heard “you’re so good with Reuben”… so, my family wasn’t surprised when I changed majors my junior year at USC, to work with children with disabilities.  Once I met my first child with autism, I was officially hooked.  I became an Early Interventionist after graduating in 2003 and in November, 2011, I partnered with a colleague to form Carolina Behavior & Beyond.  Our company provides early intervention services to children with disabilities and developmental delays, mainly serving children from birth to age five.   I love what I do and it’s truly amazing to see a child develop and transform before my very eyes.  I found my purpose in life and I know without a doubt, I have Reuben to thank for that.  He’s taught me that being different is not the end of the world, that there is wealth in every life if you have the heart to find it, and that you don’t have to be in the big leagues to pitch a no-hitter.